Growing Pains.

When I was growing up, I was always small for my age, until I hit Junior High. Suddenly I exploded, and grew to my present height of six feet. My classmates took note of the change and voted me ‘legs’ of my class. A dubious ‘honor’ since along with the growth came clumsiness and many awkward moments and even pain in my legs. Nothing more than ‘growing pains’ I was told, and eventually I stopped growing, and the pain stopped.

Although we have all grown pretty steadily in our faith and love through this experience over the years, we have experienced our share of what I would call ‘growing pains.’ It does hurt to grow but growth is ultimately good.

There were many painful ‘growth’ incidents in our life so far with Jessica, that I remember, but there is one that really stands out. Parking the car out in front of our house and walking up the sidewalk, I was feeling great, whistling softly to myself. Things were going well. I looked forward to sharing the excitement I was feeling with Renée.

I was smiling as I reached for the door handle.

I had taken a second job, hoping to move into a position where I could leave the corporate world behind, and work from home. And help Renée full time, with the never ending care for Jessica and our young children. I wanted our lives to be as normal as possible, and Renée deserved to be released from as much of the responsibility as possible. Not that we hadn’t shared the burdens from the beginning, but I had learned a hard lesson from her near collapse, and I wanted to lighten her burden as much as possible.

She deserved to be happy and spend time with our two other delightful children. I needed to be there for her. Once again, Jessica’s quiet influence was shaping the course of our lives.

I paused in the doorway, a half frozen smile on my lips, transfixed by what confronted me. Renée was sitting in the middle of the floor, looking very pale, holding a limp Jessica to her chest and slowly rocking back and forth.

“Jessica is having trouble breathing,” she said in a hoarse whisper.

Facing the Perils of Raising Jessica.

When you raise a child like Jessica, it is fraught with what might be called ‘secondary’ health risks. Because she is in a compromised health condition, she can become susceptible to a variety of ailments. Compounding that, was the fact that she had numerous seizures daily, both observable and below the surface.

One of the things we had learned was that when a brain seizure occurs, a large amount of saliva is released, which has to go somewhere. It can be swallowed, drooled, or ‘aspirated.’

To ‘aspirate’ is to basically breathe the liquid into your lungs, similar to when you are drinking something and accidentally choke. In Jessica’s case, this ‘choking’ hazard was constantly lurking there, in the background of every activity.

‘Eating’ is another hazard which occurs a minimum of three times daily. Realize, that seizures are unpredictable in their frequency, intensity and duration. I like to use the analogy of ‘lightning strikes.’ Seizures are kind of like lightning strikes in the central nervous system, and are very sporadic and unpredictable. And so, as you can imagine, they can occur in mid-bite or while swallowing, or at any time. So we have another risk to negotiate daily.

In Jessica’s case, this was compounded by her petite size and the dainty size of her airway passages including her lungs and bronchial tubes. Smaller air passages equal greater risk. Quite predictably, in spite of our close observation and quick response to any problem, she was hospitalized with ‘URI’ or Upper Respiratory Infection, numerous times.

Only hours before, I had been playing on the floor with Jessica. She was perfectly normal, or at least normal for her condition and the influence of her seizure medication. I contrasted all of that with what I was seeing.

No doubt about it, this was the worst one yet.

Kneeling to look at Jessica, I noted that she looked very pale, much like that fateful Friday nearly seven years earlier, when her mysterious ailment had first appeared. This time though, her breathing echoed around the room… wheeze…. gasp… wheeze… gasp… wheeze… a very long pause… and then… gaaasp!

I touched her cheek. She was on fire.

I listened to Renée’s trembling account of what had happened. Jessica had been a little lethargic and so she had been watching her closely. Renée seems to have sixth sense on these things. She can just feel it coming. A fact that had probably saved, and continues to save Jessica, to this day. I trusted Renée’s account completely.

Not 20 or 30 minutes before I walked in the door, Jessica had suddenly taken a turn for the worse. Her temperature began to shoot up, while her breathing quickly deteriorated .

No Time to Waste.

This was something very viral, I thought. Perhaps a quick pneumonia. Now was the time for action. I bundled her up and headed for the car.

Renée stood up still trembling. “I can’t go with you,” she sobbed. “After the last time, I don’t think I can handle it.”

I understood. “It’s okay,” I said gently. “Please call the hospital.”

A Fool for a Doctor.

The last time we had a problem with Jessica and another ‘URI’, we had rushed into the hospital emergency room and confronted a doctor we had never met before. He had looked at Jessica quickly, and catching Renée in his scornful gaze, he said with disgust, “This child is very sick… VERY sick!” She caught his implication immediately and rushed from the room in tears. Surprised and shocked at his behavior, I set him straight in a hurry, but the damage had been done. Renée was extremely hurt that he would accuse her of anything close to neglect.

I understood why she now recoiled at the thought.

In her hurting heart and soul, Renée was pleading…

‘This is the worst one ever! I can’t bear the thought of her dying in my arms. Oh, please Lord… help me!’

Racing for Life.

I put Jessica on the seat next to me where I could touch her little chest. I slammed the car into gear and raced off towards the hospital.

Fortunately, the hospital emergency room is just straight down a main street about five miles from our house, and it was about 10:45 pm, back then in our home town, a relatively quiet time. Greenlight or red light, I never stopped at all, as I raced at top speed through the darkness. One hand on Jessica, feeling her breathe… gasp… wheeze… a pause… I waited for the next gasp… waiting… waiting… in alarm I pressed on her chest… at last a long ragged gasp.

I screeched to a halt in the glaring lights of the hospital emergency room entrance. As I looked up, I could see the staff coming my way. They had received Renée’s call.

“Mrs. Walker, this is the emergency room doctor at St. Luke’s.”

Renée listened, holding her breath.

“We have Jessica here…” her knees felt weak, as she gasped for the air to answer.

“…we have stabilized her and she is doing fine. She is going to be hospitalized for a while, but she’s okay!”

Renée hung up the phone and sank slowly to the floor.

At that same moment, I sat there in the emergency room, now feeling completely numb with anxiety. I watched Jessica breathing peacefully. I couldn’t get the sound of her gasping for breath, just minutes before, out of my head.

I heard the doctor speaking behind me,“…she’okay!”